I’ve seen cases related to the neurologic variant of EHV.
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@leighbo009 Clearly you care deeply for your horse (your vet and TWO university consults and numerous tests and diagnosis). AND, you state he wants to work and is happy to be ridden. That’s a lot right there. Showing? Being around judgmental people? That’s tough. So many people are quick to condemn and ridicule without knowing the details.
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Thanks @Ghazzu So, OP’s vet has ruled that out by now…
Hopefully OP, your next consult will bring some answers.
We had to haul the filly I referred to in an earlier post to another state for the 3rd consult, but it was worth it. Of course this was long ago and travel was not such an ordeal as it is now.
I’d imagine that was on the short list of ddx’s.
Kind of out there and not sure if it would be allowed when showing but what about using a sheath cover?
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It seems to me that the OP has learned how to deal with people who notice her horse’s issue. What remains to be seen is if, at a recognized event, her horse would be considered unsound by the officials, and there doesn’t seem to be anyone here that can speak to that issue. I’d go through the rule book but I doubt that it addresses this issue specifically or the OP wouldn’t be asking here.
Someone familiar, in an official manner, with the soundness requirements in recognized events (other than lameness and respiratory issues that are spelled out in the rulebook) may know, but this being an unusual problem in a performance horse it may have never come up.
Perhaps communicate with USEF veterinary officials for an answer?
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I would consult the TD and s/he may refer you to USEA. With a note from the vet, or both vets and possibly from USEA, you may be good to go. Just be ready to explain yourself a lot. 
Obviously this is different, but I had a horse who wore a nose net. Every recognized show I went to, I had to submit an approval letter from USEA to the secretary. I gave them 2 copies (as they requested)- one for the dressage judge and one for the office. Even then, almost every time I went in for my test the judge would holler from her booth “DO YOU HAVE A NOTE FOR THAT?” and I’d have to stop and politely/cheerfully say yes and that I gave a copy to the secretary.
Or something super absorbent (but not too big!) rolled up and put in the sheath area, to be put in immediately before work and removed immediately after?
Perhaps you should carry a vet note saying it is safe to ride him. I would try some unrecognized events and see how it goes. Then, talk with a TD and make sure he won’t be pulled at a recognized event.
